Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “Lou Gehrig’s Disease”

Being Humane

Have you ever watched someone suffer in chronic or terminal pain?  Have you ever seen a young patient with tremors that just would not stop?  Have you ever witnessed someone not wanting to eat, losing weight, their bodies wasting away because of the side effects of other medicines meant to save their lives?  If you could wave a magic wand over the patient, to make any of these or other symptoms, just magically disappear, would you do it?

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Then many states will have that opportunity for voters to wave their “magic wand”, AKA the right to vote, to approve legalizing medical marijuana, joining 20 other states who have decided that it is a humane need to provide comfort and relief to patients suffering debilitating diseases who cannot find relief otherwise.  Even if six more states approve medical marijuana use, still, almost half of the United States has no plans to legalize medical marijuana.

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Alzheimers, Cancer, ALS (Lou Gehrigs Disease), HIV, Osteoporosis, Multiple Sclerosis… we all know at least one person who has suffered with one or more of these diseases.  And we all have to agree, it is definitely suffering.  Suffering triumphs over quality of life, but it does not have to.  The fact is, and cannot be denied, marijuana would help every patient deal with the chronic side effects and pains of nearly every malady known to man.

At least three times in my life, had medical marijuana been available during my multiple medical crisis, I would have done much better.  I could never control my nausea with the prescription meds given during my cancer treatments.  The unbelievable pain I endured following my open heart surgery from having my breast bone cracked in half only controlled by a narcotic powerful to knock my unconscious… great way to deal with pain, huh?  Life-long chronic pain for late developing side effects when at its worst, taking up to 4 different drugs to just touch the pain, and give slight opportunity to sleep.  I can only wish I had the opportunity to have been able to use medicinal marijuana.

My father, who recently died from lung cancer, prior to his death, had been dealing with a lack of hunger issue.  Well, as we all know, one of marijuana’s awful side effects is causing hunger.  But fortunately, he was prescribed Marinol, to help boost his appetite, which it did.  Do you know what it did not do?  It did not make him a stoner.  He did not get high.  He ate.  It helped to improve his life.

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With all the benefits that medical marijuana has to offer, how could anyone be against helping a patient live a more humane quality of life?  There is absolutely no reason at all for anyone to be against this treatment option.  Yet they exist.  And their reasons are just as confusing and contradictory as their beliefs about the drug and its influences.

As a teenager back in the 1970’s, well after marijuana was mainstream, we were constantly taught, that cigarette smoking was bad.  Not just because of causing cancer, and heart problems, but because teen smoking was a “gateway” to smoking pot, which of course was a “gateway” to harder drugs and alcohol.  But was teen smoking made illegal?  Eventually.  Were teen smoking laws enforced?  There is not going to be an answer to this because enforcement of teen smoking is a joke, especially since many parent provide the cigarettes themselves.  But over time, we have gotten away from the “gateway to pot”, forgotten about the lethalness of cigarette smoking, and instead have now made the main “gateway” label, applied to marijuana.

That is right, several want you to believe that medical marijuana is going to be the gateway to harder drugs.  Alright, I know I am not being fair.  Of course those few actually mean “recreational marijuana”, not medical marijuana.  But they do believe the legalization of medical marijuana will lead to the legalization of recreational use.  And this is what the anti-medical marijuana people want to prevent.  They want patients who are suffering, to continue to do so, so that some day, other people who just want to smoke pot for the giggles of it, which still would not effect them because they were neither patient or user, to continue to suffer.

This is the only argument that those against medical use of marijuana can state.  They do not want recreational use of marijuana legalized and they are afraid that will be the next step if medicinal use of marijuana is legalized.  And this is a stupid thought process.  And for that selfishness people will continue to suffer needlessly.

Cigarettes are known to kill people.  They definitely killed my dad and grandfather just to name two people I knew.  Have we made them illegal?

Alcohol is known to kill people.  I have buried too many to count.  Have we made that illegal?  Oh yes, we tried that.  It did not work.

Marijuana to my knowledge has not killed anyone.  I definitely do not know anyone who died from marijuana usage, medical or recreational.  Why is it illegal to this day?

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My state of Florida is one of the latest states to finally consider the humanity of access to medicinal marijuana.  On November 4th, voters will finally be to help patients deal with chronic pain, side effects, and terminal illnesses.  Spearheading the movement in Florida is attorney John Morgan who advertises his campaign with the loss of a loved one who needlessly suffered not having access to a drug that definitely would have improved the quality of life.

The sad thing is, in anticipation of approval of Amendment 2, the legalization of medicinal marijuana in Florida, many Florida communities have already taken steps to prevent accessibility to prescription marijuana.  In Naples, a very conservative community, their city council just banned any dispensaries within city limits.  In other words, NIMBY (Not In My Back Yard).  Again, the only argument given is that medicinal marijuana will lead to recreational, and Naples does not want that.  So if you have chronic health and pain issues, perhaps Naples is not going to be the place you want to rest and convalesce, especially if you need the convenience of a dispensary for something although hopefully legal, just will not be available there.

Another unusual comment as to the denial of using medicinal marijuana came from an unusual source.  The president and CEO of the Naples Community Hospital Healthcare System, Dr. Allen Weiss offered an op-ed piece in a recent Florida Weekly…

“I believe medical marijuana is a solution to a problem that does not exist.  The danger in allowance of ‘medical’ marijuana is that it could act as a starter drug in our nation.  There are already existing, safe, easy-to-take medications readily available and prescribed by oncologists and physicians (this sentence was shortened for content, but this was the gist of the comment).”

Do you see this?  Is this really the reason a major health leader is against something that would make a difference to the quality of someone’s life?  Worried about gateway usage from someone chronic or terminal?  Or is the real reason that the pharmaceutical industry stands to take a huge loss from loss of addicting prescriptions for pain and depression for a plant we all know would cost 1/100 of what many generic drugs actually cost?

I am not a pothead, or stoner.  And I do not care if someone else uses the drug for recreational use.  But having been on opioids and other prescription medications for chronic and acute pain, all having various side effects of their own, three times in my life, the odds are in my favor that I will some day face that need again.  And I am hoping that the voters of Florida do the right thing on November 4th, and vote yes on Amendment 2, and legalize the human use of medicinal marijuana.

The Benefits Of A Challenge

Hodgkin’s Lymphoma is considered a rare form of blood cancer. I know this, because I battled HD over 24 years ago. My doctor back then, I will call him Dr. S., misdiagnosed me as having a common cold. Oops, imagine that mistake. The reality, unless you were being checked for breast cancer or skin cancer, many doctors had no idea what to look for.

The upside was that for what little I knew about HD, the cure rate was considered high. It was not 100% curable, but a great cure rate nonetheless. But unlike breast cancer, lung cancer, and even other major ailment such as cardiac disease, diabetes, Hodgkin’s Lymphoma did not, and to this day does not get a lot of publicity for fundraising such as the prior mentioned ailments.

I recall seeing one commercial, during late night television, which featured a young female, a common demographic for a Hodgkin’s diagnosis, lying in a hospital bed in the middle of Manhattan. Of course, as is common in New York City, people just go about their business, not paying any attention to the sick young women on a hospital bed in the unusual location of a NYC street, or why she was there. As goes the knowledge of people battling Hodgkin’s Lymphoma.

And unlike the attention to a particular cancer paid, when celebrities such as Michael Douglass or Cheryl Crow, or even Lance Armstrong (sorry, I know, but performance enhancing issues or not, he did battle a serious cancer), there have been plenty of celebrities who have battled Hodgkin’s Lymphoma. And as each one is publicized, I hope that one celebrity becomes the one that finally will be the one who can bring Hodgkin’s to the forefront for a cure, the first cancer with a 100% cure rate. The most noticeable celebrity right now facing Hodgkin’s Lymphoma is Def Leppard guitarist Vivian Campbell.

Mr. Campbell is finishing up his second treatment regimen, the first treatment only putting him into remission temporarily. He has continued to play and tour with his bandmates. As someone who worked through his HD treatments, I can truly appreciate his efforts to continue to tour. But here is an example of someone who should clearly have the money and resources available to get the best treatment for a curable cancer, and yet, he has struggled. Perhaps with a little more research, the better and more effective cure can be found. But that costs money. To get money, you have to bring attention to the cause.

Which is why I have to admire the ALS Ice Bucket Challenge. I was challenged today by another local author, Stephen Kaufman to complete this challenge, and issue a challenge of my own to other individuals. The task, dump a bucket of ice cold water over my head, or donate $100 to ALS. This challenge has received mixed reviews as many cynics felt that doing this task was not going to do anything for the benefit for ALS research. Many felt that all the task was doing was giving people their Youtube fame on Facebook, and not much would be done for ALS research or patients.

But the truth is, people have not only been doing the challenge, but also making the donations, and many making more than just the $100 donation. Celebrities are also joining in the challenge from rock stars to athletes to politicians, to actors, many making enormous donations to fight ALS. Even ALS patients themselves are getting into the act.

As personal as my fight with the rare blood cancer, Hodgkin’s Lymphoma, my fight with ALS became personal several years ago when a co-worker was diagnosed with ALS. Ron would be the first person I would encounter, unfortunately not the last. Two years later, my brother-in-law Mike would be diagnosed following an unusual slurred speech development. If only our lighthearted concerns of being too much Jack Daniels would have been the case, unfortunately it was Lou Gehrig’s Disease.

With this being my brother-in-law, someone I was very close to, almost as a brother, I saw first hand the Hell that an ALS patient goes through as their body slowly destroys itself. One of the worst parts of the disease is that the mind is relatively in a state of complete awareness as to what is going on, but as the body slowly loses its ability to eat, swallow, speak, grasp, stand, the mind can do nothing about it. Even more frustrating according to Mike, was the inability for him to communicate. While technology would provide an avenue for him to speak, an app for his Ipad, that when he either typed words or wrote words with his finger tip, the Ipad would vocalize for him, this was not the same as being able to have just a regular vocal conversation.

Over time, the ALS became more evident in Mike, but it did not stop him from trying to do what he enjoyed. He continued to work through most of his illness, his employer accommodating him pretty much up until the end. He rode his motor cycle and finally made a pilgrimage to Ireland, a life long dream of his. At one point, he joined others, in an attempt to draw attention to ALS, by travelling to the Jersey shore in the middle of Winter, for a “polar plunge” into the Atlantic (the original version of the Ice Bucket Challenge).

It will be two years next month that Mike lost his battle. So today, I accepted my challenge, nominated four others to complete the challenge. And as many others, I will also send a check into the ALS Foundation as I have done in the past, in Mike’s memory.

It was noted via various media resources that last year alone, only $1.7 million had been raised for ALS research through various fundraisers. But in just the past two months, over $25 million has been raised through this Ice Bucket Challenge. Awareness for a rare and fatal disease has been made. Funds for research have been earned.

As someone who has battled another rare disease, I appreciate the efforts this cause has put out, and earned. I hope someone, every disease, regardless of severity, can find its own “ice bucket challenge” to help their cause.

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